Day 34 of Sam in Paediatric Critical Care
- Apr 30
- 5 min read
Updated: May 1
Location: Nottingham QMC, Paediatric Critical Care Unit
Date: Sunday 25 April 2021
A Mother's FIRES Diary
Day 34 of Sam being in an induced coma, as doctors fight to stop his relentless seizures. They came out of nowhere after what appeared to be a mild virus. They have named this FIRES (Febrile Infection Related Epilepsy Syndrome)
7am Another stable night for Sam so that is good. He had no seizures overnight, and just one small one around 6.30am. His CFAM brain waves are looking flat with just small burst of brain activity. But he is on Isoflurane gas which is holding off the worse of his seizures.
The good news is that CBD cannabidiol is going to be prescribed today. His neurologist has given it a 50/50 success rate.
Sam's ketone levels are still good, holding at five within the target range for ketosis. However, we know they will reduce as he has been taken off his ketogenic diet due to sky high triglyceride levels.
Sam’s triglycerides, fats in his blood, need to come down. At their highest they reached 41, when normal is around 1, and they are now at 20.
We think this may have been linked to his TPN (the nutrition he’s receiving through a drip), but I also think it is because his liver has been under so much strain from all the medications, it hasn’t been able to process the fats properly. His body now needs to work hard to metabolise and clear these fats.
12pm Sam’s heart rate and blood pressure are beginning to get slightly elevated from his norm, so maybe that is something to look out. It is now on my radar as we haven’t had a high heart rate before.
My brother sent some more recordings through of books he has read for Sam. Heys and Archer, his cousins, also sent through some recordings of jokes as well! Sam would love this!
2pm Although Sam’s seizures appear more stable, this is only because of the isoflurane gas, which is essentially holding things in place. We are no closer to stopping them. If the gas is removed, his seizures will come flooding back.
There is still a huge urgency around finding the right combination of standard anti-seizure medications that can control his seizures outside of intensive care. Right now, 34 days after his very first seizures, that combination remains elusive.
There is a growing acceptance that we may not be able to stop Sam’s subclinical seizures - the hidden ones that don’t show outwardly but appear on his CFAM monitor as changes in his brain patterns. Instead, the focus is now on controlling the clinical seizures - the ones we can see.
We have also had the most devastating conversation.
As well as trying to stop Sam’s seizures, the doctors are now trying to answer another unbearable question: whether Sam could have any quality of consciousness between them, as his brain patterns are not normal.
But the only way to know is to try to wake him.
Can you imagine your child facing such an unknown?
The medical team have to change his isoflurane gas every 24 hours, and it is my new stress area. Every time it is changed, he gets a massive surge of it. And I HATE it so much. As I have said previously, I need things to be on a constant, any small blips to his vital signs gives me extreme anxiety. When he gets the isoflurane surge it can interfere with heart rate and blood pressure etc. It is horrific to watch your child have these side effects, you feel powerless. I keep wanting to scream at everyone to leave him alone, let me care for him. But I can't.
5pm Sam has had his two daily visits from his physiotherapy team, and they continue to be awesome. I love the way the speak to Sam all the time as they carry out his exercises, they are so engaging with both Sam and me. I actually look forward to their visits. If Sam is having any respiratory issues they always make him better. I have so much confidence in their abilities.
We have one particular nurse who we seem to be getting more regularly and she has suggested that she becomes our Lead nurse. This will mean she will attend meetings with us, and be part of Sam's close team etc. I can’t begin to tell you how much I appreciate this. I trust her abilities, she is good at calming me down, and has a good directness about her - which I need. She is exceptionally experienced and is very methodical in the way she works. She ticks so many of my boxes. Though there are so many other awesome nurses here as well.
Having the private room for Sam is working well. Close family members are visiting daily, which is lovely for Sam. We have a rota system so we don’t have too many people in the room at once, but it is giving grandparents, aunts and uncles chance to spend precious time with him. I just hope Sam can feel the love that he is being surrounded with.
11pm The days seem to go so quickly lately. But I feel exceptionally down, I am finding it all so tough. I just don’t want to speak to anyone - unless it is to his medical team. I literally have no capacity left in me for anything other than looking after Sam. I can’t even give any proper updates to anyone.
We have continued to keep Sam’s battle exceptionally private. No-one but family, my very close friends, and some work colleagues know about this. Our focus is on Sam, getting him through this and home where he belongs.
I have continued to read lots to Sam, play audio books and music to him, keep his skin well moisturised, and do his daily cares with his nurses.
Once I feel Sam is stable, I say our good night prayers together, sing him his good night song, tell him how loved he is, and how proud we are of him and I gently reassure him mummy will never leave his side, we will get through this, and he just needs to keep fighting. I then head to bed.
As like every night, I will myself to sleep by praying and hoping for Sam to have a brighter day tomorrow. And I hope that Sam’s nurse has a boring and uneventful night.
Our next diary update will be out shortly. Until then I will leave you with this...
A mother’s love is the fuel that enables a normal human being to do the impossible.
Marion C Garretty
💥WHY WE ARE SHARING THESE DIARIES💥
There is currently no cure for NORSE and FIRES, no consistently effective treatment, and the cause is still not fully understood. Around one in five people do not survive the acute stage. While recovery is possible, many survivors are left with significant lifelong neurological disability, chronic epilepsy, and complex care needs.
Five year old Sam was a healthy, happy and loving little boy from Derby in the UK. He was rarely ill. Just after his fifth birthday, on 22 March 2021 at 8pm, the fight of our lives began when Sam had his first ever seizure after what appeared to be a routine viral illness, and our world changed forever.
With love and thanks,
Sam's mama bear 🩷
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